July’08 felt progressive right calf stiffness and pain. Ketoprofen orally which relieved pain but no stiffness.Had a bad cramp on right calf, neuro clinical exam. was normal as well as venous eco-doppler on both legs.Sept.’08 right arm weakness, another thorough clinical exam. with neurom.neurologist and brain CT, both normal,weakness disappeared after several days.Mid Sept' 08 “favourite neurologist” ordered extensive blood work, brain, cervical and lumbar RMN’s all normal.Sept.‘08 stiffness spread to left calf and right quadriceps,few widespread fasciculations.End Oct ‘08 stiffness on both upper forearms, neck, face, “favourite neuro” made thorough clin. exam.(normal).Clean needle EMG of legs.He put me on delorazepam 3 times a day, said it is psychosis together with BCFS.Medicine improved symptoms.Nov.’08 stiffness/slight pain on left emi-thorax,slight breathing difficulties on that side,Thorax RX, ECG,complete blood work,thorough clin. neuro examin. all negative.Nov.‘08 4 limbs clean EMG with neuromuscolar neurologist,told me it’s it’s a psychosomatic issue.End Dec.’08 pain in feet,clean 4 limbs EMG by a 3rd neurologist.End Jan.’09 stopped benzos,symptoms back almost totally.Normal thorough clinical exam. by "fav. neurologist" told me it is BFS/BCFS.
End Feb’09 went to neurom. neurologist reporting the same plus perceived light right hand weakness and minor occasional tingling/twitching external hand, made a thorough clinical examination (normal) told me IT IS NOT ALS OR MND. it a psychosomatic issue.End Mar’09 clean 4 limbs EMG by my 3rd neurologist, told me it is NOT BFS/BCFS OR ALS.Some weeks ago started feeling slight fatigue on right arm and right quadriceps and int. forearm spasm/cramping espec. after exercising, emi-thorax sympt again, stiffness of bottom of tongue like pulling it, tongue tremor (internal fasics?), occasional slight slurred speech and slight swallowing like lump in throat.Had Otorhinolaryngologist visit which was normal.Please advise me
You have seen several experts in the right fields to determine the diagnosis; You are right to be sure to rule out ALS, as that is by far the most serious item in the differential.
I don't see an MRI in your test list-- that and your spelling of 'favourite' make me suspect you are not in the US. You need an MRI, if you haven't had one.
In fact, I will take this one step further, since we are talking in the US about healthcare reform... I will first say that I HATE the current healthcare system. But that does NOT mean I think that the government will do a better job of saying 'NO' than insurers do now. There are clearly plans in place to reduce costs through 'queueing'; making the wait for some things so long that the person stops waiting or dies, saving the cost of the test. Maybe you had an MRI-- if you did, just forget all this... but in the US a person with your symptoms would have an MRI often within a few days of your first appointment; if you went to the ER with these symptoms you might have an MRI within a couple hours. Under 'reform', there are plans to make such tests less readily available (read Tom Daschl's book and the dozens of articles by healthcare scholars about the future of care in the US if you don't want to believe me!).
Unfortunately, the way to get something passed isn't rocket science; the good things, or 'cake', are put out first, and the public eats it up.... then after a point of no return the spinach is served. This pattern has been used by both sides of the aisle to pass difficult legislation, and it is clearly 'in play' now.
The question: is it better to pay lower costs, and in return make a test like an MRI something that you drive two hours for, and wait 6 months for-- if you get it at all? There will be times when the diagnosis is truly 'psychosomatic'-- and money saved. But there will be other times when the eventual MRI shows white plaques that could have been halted months earlier.
I do think you need an MRI if you haven't had one. If that is indeed the case, take a trip to the US and pay 400 bucks for one-- but do it before July 1st!
Thank you very much for your reply.You are right, I am from Italy, Europe, I carried out all test/visits/bloodworks by my own pocket!!, a lot of money...I was not willing to sit and wait, I am far too scared and axious! I had 3 MRI's without contrast (brain, cervical, lumbar) in Oct.'08, all normal. So Basing on the info I provided, you believe that ALS can be ruled out but I would like to be ensured that I do not have initial predominant upper motor neuron degeneration(costant progressive “patchy” stiffness and sometimes fatigue, little fluctuating but almost completely “masked” by delorazepam) which would develop into the complete form of ALS in the next months(because small rare cramps and widespread fasciculations I am feeling now could be the “prelude” of early lower motor neuron damage?!).I do have negative Babinsky, Hoffman, all deep tendon reflexes judged normal (last clinical neuro examination end of Feb.’09),no problems at Mingazzini I and II, but I know that in some cases these could appear positive in well developed/pretty advanced stage of motor neuron disease when deficits become really obvious (big troubles walking, speaking etc.).My concerns:
1) would it make sense doing in two months another EMG including cranial nerves (for my continuous odd sensation of tongue pulling/stiffness together with few fasciculations and weaker face muscles sensation) as well? (all my EMGs till now were made testing 4 muscles per limb, just sticking needle in only one point per muscle (not moving the needle inside it) for 10 sec. and then contracting muscle for checking recruitment.
2) Can recruitment be abnormal in Upper motor neuron damage and be picked-up during needle EMG?
3) How can a psychosomatic reaction appear in such way, that is progressively involving my whole body, with many increasing number of different symptoms and on a steady “baseline”of muscular stiffness and fluctuating progressive cramps/fasciculations?
It is 9 months from my very first symptoms and my life quality now is extremely bad...
I thank you in advance for your immense patience with my report.
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